I get many comments from friends and fellow various illness sufferers from around the world that often my writing gives them perspective into their own lives and helps them see things in a better light.
That is a very nice and humbling comment when I consider most of my writing as an outlet for me.
This year has been a tough year for our family and many others.
There have been many times that I have searched through what seemed a swamp of suffering only to turn out to be an ocean of learning, growing and my old friend perspective.
If I go through all the things that happened this year it sounds like an old country song:
We had to move in with my wife’s parent’s house because disability didn’t cover our expenses.
Since I moved from Atlanta my treatments have discontinued because the doctors have no other alternatives to help my pain. This includes the NIH (National Institutes of Health for Rare and Undiagnosed Diseases).
Several people have approached me and my wife and accused me of being an opiate addict and not really in pain (which I have served tirelessly to ensure is not the case).I have gone way beyond what doctors have suggested in pain medication prescribed to the point that I suffer more because of a significant voluntary opiate treatment reduction in exchange for preserving long-term options for pain treatment if things get worse.I hope to find a way to go to the Cleveland Pain Clinic in 2012 or Johns Hopkins for better and less dangerous options.
We had to sell our only car that had over 210,000 miles on it because we could no longer afford to pay for repairs.We have to borrow cars to go places and there is no bus system here.
I had life saving scoliosis operation that was one of the most painful and testing times in my life.
I went through a long rehabilitation process learning how to walk and do basic things after the surgery.
My good friend Scott died from complications of Diabetes, he was my age.He died while I was in the hospital in New York and I couldn’t see his family.
My father died after a long battle with Diabetes.He suffered for a long time and his battle was so hard especially there at the end.
Cindy, one of my good friends and someone that has helped me so much through this process, died from breast cancer.She was my age.I couldn’t go to her funeral because I was at my dying father’s bedside.
I lost my Blue Cross Blue Shield Health insurance because of a technicality bringing back in my pre-existing conditions.I have to pay out of pocket for all medications and doctor visits until July 2012 when hopefully Medicare Part B will kick in.We have received over $100k of bills from my scoliosis surgery that BCBS has yet to pay.
Our house caught on fire last week and we had to move out.There was an early morning electrical fire in the house that burnt out a god bit of the upstairs where we stay in the house.It will take four to six months to fix so that we can move back in.
The same day that our house caught fire Mary and I started marriage counseling.Life has been tough for both of us and we are trying to save our marriage.Statistically over 75% of marriages that have chronic illness involved end in divorce.I can understand why in when you look at the damage that illness does to a relationship.
We have accumulated more than a mountain of debt from medical bills and life expenses.In November of 2010, we were debt free for a short moment.That moment didn’t last very long.
And you can’t finish off a country song without the famous, “My dog died” line.Well my buddy of many years, Indiana (Indy), died from cancer.He saved me the first time I was ill thirteen years ago.Unfortunately there was nothing I could do for him.
There are literally hundreds of other small things that have happened that have really made this a hard year.
So there is your swamp. I can wallow in it or find perspective in all of the situations. I can be a victim of an unfair dose of bad things happening to me and sit on that, or I can move on with a fresh mind ready for the next thing good or bad. I have to be honest, at times during this year, I wasn’t always “Mr. Perspective”.
I have suffered a lot of depression and many days worrying about tomorrow. There is no special formula or exercise that I go through to get through all this so I could never write a book on how to deal with misfortune. But what I can do is tell you that somehow, God has always reminded me of his grace in every instance good or bad. That is probably why I have “May Grace Free You Forever” tattooed on my forearm. That is probably why Mary and Joe Mayernik created a logo for my site (and later my cause) called “Be Strong. Take Heart.”
I have written about many of the things that have happened this year so I will just give you my take on what is going on now. The latest tragedy of our house burning is one that is very surreal and it has given me probably the most perspective of any event this year. Last Wednesday morning, Mary came in to the room just before 6:00am and told me we need to get out of the house, there is a fire. She showed me the bathroom ceiling where she thought there was fire. The ceiling was bubbling and it was like an oven in there. We both immediately were getting everyone of the house.
She had already gotten everybody up so it was a quick dash for the most important things and out the door we went. By the time we were out of the house the fire department was at our door. They are right down the street from us so that helped quite a bit. Mary had the kids in one of the cars to keep them warm because it was freezing cold and raining outside.
I stood outside the car and helped her back up around the fire engine to a spot across the street. I still remember the moment like a slow motion sequence. I looked at the house and there was a jet of flames coming from the side of the roof already blue and roaring. I panned my head back over to the car and the kids were in the backseat crying. They were scared because everything they knew was changing again and changing drastically before their eyes. Their eyes echoed my heart but I tried to remain calm and steadfast to help them.
All of the sudden everything sped up.
The neighbors across the street were ushering us in their homes to be warm and get comfortable. A father of both Reese and Lakin’s friends whooshed over to take them to their home where they could be with their friends and away from the chaos.
They were instantly much happier. People kept bringing over little things like coffee and offering help as much as they could. I stared outside the window watching the world wake up and our house burn down. It was so surreal.
I couldn’t stop thinking about how Mary gets up every morning and goes to work out. This one morning she took pause with a weird smell in the house and investigated it. If she wouldn’t have, I can tell you for sure that the girls and me would be dead.
Fortunately we have insurance and that should help pay for most of what we are going through. Sure we lost some stuff, but it is just stuff. We have lost stuff before like our home and our car.
My first instinct used to be how am I going to take care of my family and how am I going to raise money for this one. But that wasn’t my reaction this time. I had a certain peace about what was going on.
After one hell of a year, my house was on fire, this should have been a tipping point pushing me over the edge. But for some reason it pushed me back the other way. I’m not saying that I wasn’t stressed about certain things, I was, but something changed in the way that I viewed the world. All of the sudden, it wasn’t about me.
I didn’t care if people gave us money to help out. I thought about all the other people that go through this and don’t have good insurance. They lose stuff but they don’t have a safety net to keep them from being homeless. The American Red Cross helped us out with immediate stuff.
I began to think that we don’t need help, what about all the people in Haiti that are still homeless and suffering. What about all of the people suffering in the Congo from years of rape, theft and genocide? Shouldn’t they come first?
But I just accepted what was for now. We found a hotel to temporarily stay in and got the essentials for the family. Our family was safe. To Mary and me that is all that mattered. For some reason, that instinct of providing monetarily for our family has turned into providing for those less fortunate even at the expense of us not having everything we need or mostly want. Yes I have these crazy dreams about what I want in life, but in the end they just don’t mean anything while people are suffering.
Marriage counseling that day was very emotional. It was our first session. I have so much pent up anger, sadness and grief that it has affected our family life. Being in bed most days is alienating me from the family and I am not giving Mary what she needs, which is to fight harder and be more present to her and the family.
We go again this week.
It is tough when you realize that there are parts of your life that you can’t control, that are invisible like my illness, but that doesn’t mean that you can’t somehow dig deeper and try to be more present with your family. At times, I feel like they would be better off if I was in a facility that helped take of me until I got better, but I realized that I may not get better. It may not be in anyone’s control to help me or make me better. I am just going to have to dig deeper to be more of the person I used to be in spirit and love. It is going to be hard, but I want it to work, I feel like we both do.
And not just for the kids, for us and the love that started this marriage, this friendship. It will take time, but we are trying and I have a long way to go.
With everything that has been going on, an old project that I want to get off the ground has re-emerged in my thoughts.
I bought the domain name mindblind.org a while back ago with an idea of what I wanted to do with it. It is on my andybarwick.com site. I don’t have a physical mindblind.org website yet but it is on the list of things to do along with becoming a 501c non-profit organization.
I want mindblind.org to be a facilitator for those with invisible illnesses to get the help they need through the various organizations out there. I want to awaken people to this epidemic that is growing of people suffering silently and unknowingly to the public eye.
There are millions that need help even if that help is just for people to know and trust that they are suffering pain and illness and not faking it or lazy. I really have a heart for this now.
There are so many people that write to me from around the world that suffer enough from pain and disease, they shouldn’t have to suffer from people doubting what that their suffering is real and present. For those that would like to help me get this off the ground and keep it going please contact me for further details.
There is so much that I have to be thankful for ending this year 2011. Yes, it has been a difficult one but I have survived a very tough surgery and we are surviving a tough life. People have given me hope that humankind has not lost empathy towards others and we are not completely a society turning inwards. In fact, I find with many people the exact opposite.
In this year of tribulation, many people have found their own perspectives on how humanity can grow and give even in a down economy. This makes you believe that as things get better that we can keep this going to help others get back on their feet. The ripple effect is that people helping people increases the number of people able to be productive to society, increases the number of people helping others in need and it just keeps building. It ends or begins to decline when we lose perspective and look solely towards our wants and needs. I’m not expecting a world of Mother Theresa act-a-likes, but I do hope for improvement.
Slow and steady.
For those asking how they can help us, here are my suggestions; first help others in greater need. Right now we have needs but we also have some resources like our insurance to help us back on our feet. There are so many people that are not so fortunate. There is a single mother here in Beckley that suffered our same fire fate but did not have insurance. People like this need our help.
If you would like to help, please contact organizations like Appalachian Community Mission and speak with Ryan Snuffer. There are many families in need like the single mother and this mission could use your help. They are a 501c non-profit so you can even get a tax deduction for your help.
If you can’t give financially, remember that acts of service are needed as well. Money helps buy things but it doesn’t physically build or move things. Acts of service are just as important.
So my hope this Christmas is that people will give more and have a few less presents under the tree for themselves. I keep pointing back to one of my favorite songs right now which is by Sara Bareilles called “ Love is Christmas”.
It is the epitome of where we are and I encourage those that enjoy the song to buy it and gift it to others.
Thanks to all those that have supported us this year. I am expecting things to change in 2012 both in my illness and in what I give back to this world. My only hope is that I don’t get stuck back in a swamp without perspective.
I have been richly rewarded with that this year with much more than perspective and I don’t want to lose sight of that.